Ebv/Mono......does this end?

Posted , 6 users are following.

i keep hearing things like you'll get better, just takes time- and other things like it may never go dormant.

im on the 7+month mark

hit hard overnight with this virus

feeling like when does this end ?.....

healing outcome stories well appreciated......

also symptoms, mine have come and gone while some have been consistent throughout

muscle issues-by far my biggest complaint**

my muscles have been affected since day 1

when does this all fade away.......

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17 Replies

  • Posted

    Oh I do empathise Starr, I wish there was an easy solution to all of this. People who haven't been through it don't always grasp just how intense and terrible this virus makes you feel, how much it completely drains you and floors you. It knocks your confidence for six too and it's so hard to go through weeks and weeks which turn into months and months feeling this way, when getting through a single day in itself is so hard and a big achievement when dealing with this.

    I'm still thinking about you Starr, wish the answers were easy to see or come by but let's keep trusting God, He is going to heal you I still believe that. And take heart from the fact it is still very normal at 7-8 months to be in a horrible and intense phase, but it can also be very normal to see a big step forward in a short space of time after lots of months feeling stuck at the same horrible level - so hang in there, hoping for a better week ahead for you. Keeping you in my prayers.


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    • Posted

      thank u Craig

      i appreciate you always cheering me on and your kind words-

      im ready for complete healing!!!!!!!!!!!!!!

      hope you are well!

      praying for you.........always

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    • Posted

      Thanks Starr your prayers mean a lot. God has been helping me a lot lately, He's been so good to me. Your prayers mean so much. I'm keeping you in my prayers too, He's going to pull you through this I still have great faith.

      You're so right when you talk about the internet being such a frightening place to look....when you go on looking for things for hope and encouragement and it's always unfortunately the scare-mongering stories and posts that seem to come up. Remember the vast majority of people do get well from this and don't post anything online, it's only maybe the very small percentage who have problems that you hear about. And I also agree regarding the doctors, so many just don't understand and leave people in the lurch to deal with the physical, emotional and mental side of this without the appropriate help. It does seem that many doctors minimise or don't appreciate how awful and debilitating this thing can leave you feeling.

      So sorry to hear that your 40th birthday has had to be during such a time of hurt and anguish whilst going through this. There will be much better ones ahead God willing I do believe. It's Easter week Starr, a reminder that there is hope, that God performs miracles and is faithful to those who look to Him and seek Him. And He knows you've been doing that Starr, so hang in there He is faithful and His hand will move in your situation, Jesus is alive today and is still the great healer. Hold tightly to that, keep reading and listening to healing scriptures, keep praying and asking others to pray for you, Jesus is our man Starr He's going to get you through this - you're not on your own with this rest assured.


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    • Posted

      thank u

      feeling so low

      your words mean a lot

      my faith is so tested through this because of my painful past

      i feel so stuck and confused

      people talk of relapses

      i have yet to feel normal for 8mos

      are my good days coming then relapses happen after good days

      i feel like with these certain standing symptoms while other come go

      is this my normal

      the whole thing is so confusing

      i dont get it

      i pray but feel no one is listening

      im tired of jelly legs/back/leg pain fatigue the whole thing is old

      i want to be free from this and feel like why do people say they feel good then feel bad

      for me its sick then if i push sicker-sick on too if sick

      im not in relapse phase yet

      how does this all work

      i hate the lack of info out there


      i thank u Craig

      for all of your heart you give us

      God is near but i feel lost through this

      happy Easter

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    • Posted

      Hi Starr,

      One thing I learned the tough way through this virus was to try not to pre-empt or figure out and understand the course of this virus in your head, because it just drives you crazy and there really is no logic to its course often or how you can be feeling not too bad one day and then so much worse again the next day or week or whatever. It's a frightening and horrible experience Starr, I do empathise and just want to encourage you to hang on and let you know that it won't always be like this forever, that you are going to get through this and are going to get breakthrough and victory over this thing, thanks to God.

      God knows exactly what you're experiencing right now Starr, He knows that you feeling weak and weary and how discouraging at times that must be. But there is HOPE - as you say even when you don't feel like it God is near, keep that truth in your mind and it will stand you in amazingly good stead. You will feel His presence and His anointing again, I TRULY BELIEVE THAT for you.

      It's Good Friday when I write this - there is hope because of what happened on this day, it's hard to comprehend the depth of it all sometimes I know, but Jesus did take all our sins and sickness away on that cross. He said 'it is finished' on that day, and for you Starr I believe that the day is coming where those words will come into life in terms of this virus and horrible time you're going through in your life - it will be finished and you will enter into a new phase of good health, peace and joy again.

      Thinking of you and hoping for a settled Easter weekend - keep looking after yourself and remember God is giving you the strength and you will get through this and see much better times ahead. One day at a time that's all any of us can do.


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    • Posted

      thank u Craig

      good words to live by

      thank u so much for your encouragement this forum is all i have at this point in time as far as resources the dr hunt is over

      im just pacing and resting and trying not to thinki have some disease although the negativity is still in the back of my mind

      this virus makes you gloomy

      i will try not to figure it out but being in dentistry i love science and want to understand all things knowledge is power

      but this i cant figure out?

      hard to let that go

      did u have symptoms that went from beginning into the end?

      thats what confuses me

      the ones that stick the ones that have come & gone and the ones that are up/down consistant

      makes me think

      is this it?

      i cant deal with it almost

      overwhelming my life changed over night

      8mos later


      this virus just has completely thrown me off in all ways

      my confidence everything

      its been so hard to face

      i feel so stuck

      the anxiety is annoying too

      makes you so afraid of nothing basically

      im praying to heal quickly i cannot deal with jelly legs or strange feeling muscles or pain or brain fog etc etc etc---- any longer

      how are you and your back? neck?

      hope you feel super and settled!

      i hope you are doing well and have a beautiful Easter Wknd

      i may try to get to church but not sure if i can pull that off

      God bless you this special wknd

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    • Posted

      Hi Starr,

      It is so hard to try not to figure out a solution to this thing and it just drives you mad because often with this thing the solution is just extended time and allowing your body's immune system to get on top of this in its own way and time.

      Have faith Starr because your body is so much more resilient than you think - it will fight back from this thing, it just knocks it for six but you will heal. And please know Starr that in NO WAY is this it, honestly there is good health and a full life after this thing. I struggled badly with it for the best part of a year and that was 12 years ago and with God's grace only once I was recovered I have been able to live a full and normal life again - glory only to God for that and relying on His grace and strength and mercy every day with that. So keep hanging on, you ARE going to get COMPLETELY better with time and back to a full and healthy way of life again, I believe that in my heart

      Thanks for asking about my back and neck, things have been more settled for me this past couple of weeks and very grateful for that. Still just taking it a day at a time and remember that I need God for everything and every need. Praise God for His goodness.

      Wishing you a very Happy Easter also Starr, hoping that you can make it to church and even if not God knows it's hard for you right now, don't worry - Easter is a time of hope and victory - hang in there Starr - praying for God's healing, anointing and blessings for your life and circumstances today, in Jesus' name.


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  • Posted

    Hi Starr. I just want to start by saying that this virus is fking horrible. I have never been through anything like this in my life and I am 53. Today is my one year anniversary of the stressful event that shook my life and caused my reactivation. I am 11 months+ since diagnosis. I have had so many symptoms if I were to put them down in writing it would be a novel. I have been up and down on this rollercoaster. Just when I think it is going away it would come back. I would have triggers like stress.....other illnesses....hell even constipation and dehydration caused relapses. That being said I am finally having more good days then bad. Even my relapses aren't bad at all now. Yes, I still have them but they aren't debilitating anymore. I lost 25 pounds with the virus. I am finally gaining again. Mono also seemed to effect my hormone balance and when I got that corrected my symptoms started getting better. It is pretty savage but as far as my personal experience and all that I have read.....you will get better and at the very least you will find a decent new normal. I have a friend that has had chronic EBV but she is rare and has learned to live with it. As her relapses are just annoying.....and that is where I am. I can feel that I am relapsing but it is so mild that I get through it. You will too....just keep taking care of yourself. Take things slow. Do what you need to do to make yourself feel better. If that is seeing specialists to rule things out (I have seen a few LOL) to just taking a nice warm bath and laying in bed. There is hope 😃

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    • Posted

      thank u Wendi

      for your info

      much help*!!

      the internet has been my worst enemy through this


      youre nervous when will i heal will i be normal when can i have a real life back

      this has shaken me to my core i have faced scary very difficult things in life plus being a military wife faced 10 month deployments sat home alone im a tough tough person and thing has broken me down and brought me to my knees

      the fear

      the pain

      the unknown

      no cures

      no help

      drs in complete denial

      they are such jerks period all of them

      so this forum is what i lean on

      i thank u for your insight

      i was wondering is it normal for symptoms to come and go but yet have persistant ones throughout

      ive had a few concsitant ones that seem to be present from beginning into now-

      i was 39 when i got this and now 40

      sat home on my 40th to ill to go out

      so sad

      this is just too much all of this

      this is a first for me


      hit me overnight

      had no idea this existed heard about mono

      but thats it

      dr said 6 weeks

      im on month 8

      things seem to be winding down but sort of stuck too

      i to could write a novel of my symptoms


      i cant believe we know how many moons saturn has and yet we suffer in silence with no help just because

      im baffeled just shocked

      eating perfect eating very nutritous resting cause if i push i get sicker

      this is no life

      hope you are well

      glad yours is winding down......

      healing prayers to you!

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  • Posted

    Hi again. I have had this like I said for a year. I missed the entire first year of my grandson's life. I didn't make it another grandsons birthday. I was in bed for months of this. I too am extremely tough. I raised 9 kids. I have been homeless etc. I have Fibromyalgia....IBS and some other chronic illness plus a few mental ones too but this kicked my ass. I have had a child hit by a car and nursed back to health etc etc and this is the hardest thing I have ever been through. I have never had anxiety like this gave me. I have it normally but nothing like this. I cried more in this year than I have in my whole life. But it DOES get better. I promise you it does. The thing about this is.....it will tease you and give you good days just to snatch them away. And it takes a while after you start finally having good weeks to let yourself believe that this might actually be ending. Or at the very least that it might be better.

    And don't even get me started on doctors!!!! Mine didn't even know that EBV was a herpes virus. He gave me NOTHING to help. I had to do research.....beg him to help me. All he wanted to do was put my on antidepressants and send me to therapy because after a month or so I was supposed to be over it so it must all be in my head. But it wasn't. So I started advocating on my own behalf and enlisted my husband to be my voice when I couldn't speak for myself because I was crying too much or coming off as hysterical. I went to specialists to rule out things such as MS. (I still have internal vibrations but not as much) I went and actually saw a gyno because a lot of my symptoms were hot flash related and I came to find out that mono can affect your hormone balance. I had high blood calcium from being bedridden for so long so I saw my surgeon to rule out anything serious.

    As far as persistent symptoms.....mine are like dice. They get tossed in a cup at night and in the morning are thrown and I get those for the day. Muscle aches are a bad one. I have had horrible digestive issues (which are getting better!!!) and those cause me the most anxiety. Monday's seem to be the worst for me because that is the first day after the weekend that I am all alone in the house.

    All this being said......I am doing SO much better. I took Monolaurin for a couple of months. Not sure that helped. Not sure anything REALLY helps to be honest but time and rest. Do what you can......and yes, you will relapse when you push yourself but it will eventually not be as bad (and will go away). And I am with you.....mine hit out of the blue after a very stressful event. But I think I was worn down for a while and that was just the boost. I think I had been fighting it for at least a few months or so before something just pushed my immune system and it attacked. I know it is all discouraging and you think you will never come out of this. I was there.....but I haven't taken any Klonapin (I started taking it in VERY small doses for the anxiety, it took the edge off) in two months. I am able to do everything around the house that I normally did before I got sick. I am FINALLY able to leave my city (seriously didn't leave for months) to go to eat.....I can go do short hikes. I am back to sewing......taking pictures, planning on things a week in advance etc. YOU will get there!!!!! You just have to realize what your limitations are and know that you will relapse but that is OK. When you start normalizing it all, it makes it easier. If you need to talk hit me up 😃

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    • Posted

      Hi Wendi,

      Your posts are so full of wise and encouraging words for anyone going through this dreadful virus, it really hit home to me how deep and intense you have suffered this last year and to make it through a year of this thing takes all sorts of courage, heart and determination. The lowest points of this thing can feel like almost too much to bear, just an awful burden, it can make you feel so discouraged and down, I do empathise Wendi and remember how awful I found that first year to deal with also.

      But please take some heart from the fact that my experience was that Year 2 was so much easier to cope with. And these steps forward you've taken are not just going to be a new normal, your body will keep getting stronger and stronger into that second year until you reach a stage where you just feel well again and able to live a full and normal life. So don't panic if you feel like you've seen some improvements but still not as much as you'd hoped for or like, because it will come Wendi, truly it will.

      Thanks again for your wonderful posts and contribution to this site - your words will absolutely just been what someone needs to hear right now and it might be today, a week, a month or a year before they read it, but it will touch and help someone so thank you Wendi you are a star!

      AND this second year is going to be one of progress, strides forward and new hope and health for you - I really believe that. Do keep in touch and let us know how you are doing, and message any time whether feeling good, bad or indifferent!


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    • Posted

      thats great insight

      wow you are a tough woman!

      i thank u for all of your time

      so glad to hear youre on your way!

      crazy this thing-

      my persistant symptoms have been leg/back pain/muscle weakness/jelly legs

      drives me nuts

      things have come and gone but this seems to be present always-**

      only sometimes its not bothering me as much-

      but the more i move the more pain! its like ya cant do anything!!!!!!!!!!!!!!!

      these are some symptoms i deal with daily and others that are up down in out--

      tired usually- but bad fatigue goes up & down

      a little nausea


      brain fog up down

      headache dry cough




      night sweats

      those are the things i deal with daily or if i over do it as of now****in addition to my usual symptoms-

      its like does this end?-:)

      my confusion with relapses are this:

      you say you feel "good" then relaspe

      its confusing because my jelly legs and persitant symptoms are kind of always there/some up down-

      but then if i do too much its sick on top of sick*

      like there havnt been feel 100% days yet?-

      it makes me feel like are my normal days coming? then this still winds down?

      i havnt had a day in 8months where i feel "normal " then did too much and relapsed

      its just been sick....for 8months-but has been random with hundreds of scary symptoms



      fingers curled first wk to name one!!!- man alive

      evil this thing!!!!!

      if i do to much

      im sicker-

      it makes me feel stuck

      is this it?!

      or am i not reached the actual recovery phase and still am in the infection phase?


      fade away already!

      well i am happy to hear all of your info and again i thank u


      (hope my notes arent all over the place) -:-)

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    • Posted

      I had the same thing and it isn't permanent but it does come back some with relapses. The stronger you get and the longer you go it will start to diminish. I don't know if you were bedridden through any of your illness but that was a contributor to my weakness and body aches. I would even get short of breathe just doing small things. And chest pain. Oh the chest pain. Now that I have been better more than sick all those things are going away. That being said and 4 days in to my current relapse, I am back with the body aches. Mine move tho.....some days it is my back. (so much pain) and then my legs (so much pain) Even my feet.....so aches are pretty normal with this. I wake up feeling like I have been hit by a truck. But I know this will pass and just get on with it LOL This relapse has been the worst one in like 2 months Ugh 😦 It will pass tho. I know it will and I can still completely function 😃 Have to find the bright side. Hope you start having more forward progress!!!!

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    • Posted

      I remember that feeling Wendi when going through this virus of waking up and feeling like being hit by a truck, that phrase resonated with me when I read it for some reason, it's an awful feeling it really is.

      Just want to thank you for your wise words and encouragement once again Wendi, and to wish you a Happy Easter. I'm still believing this is your year of full recovery and breakthrough. I see such wisdom in your words and advice and you truly are a blessing to the site here!


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